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Wednesday, November 20, 2013

My mind isn't working very well. It's been especially bad leading up to and following the second round of Botox injections I had (November 18th). Honestly, I just don't feel very well, and the stress of should's and supposed to's are simply overwhelming me. Not to mention, a wicked cold front is set to come through in a couple days, which normally knocks me down pretty hard. So, I need to step back before I just shut down. I hope I'm not away for long... I'll write when I feel moved to.

I'm asking for patience, grace, and forgiveness... from both my readers and myself.This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

As a person with chronic pain, I'm having to learn to live with limitations that I never had before my accident. The constant, debilitating pain has definitely challenged my autonomy and self-reliance.

Before my car accident, I was pretty independent and autonomous. I loved having my friends and family to back me up and/or help when I needed it, but I also loved being able to take care of myself.

Since my car accident, however, things have been much different. Suddenly, I had to try to learn to depend on others because I was unable to take care of myself. I've never been good at letting others take care of me... which was fine... until I actually had/needed to do it.

I don't like depending on others. But, I think I've gotten better at it... at least better than I was before the accident.

I often cannot make plans to do something. Believe me, I used to be queen of making plans! Making to-do lists used to be enjoyable. Now, it's necessary. If I don't write it down... I'll probably forget it.

I have to see how I'm feeling the day-of an event, which is difficult (physically and emotionally). Then, I have to think several steps ahead about the situation I'll be in... sitting, standing, walking, driving, sounds, lights, crowds, etc... it's overwhelming just thinking about, so it's sometimes easier to just stay home.

Even on short outings, I have to be prepared for a migraine attack, so I have to carry "resources" with me (such as: snack/food, drink, meds, remote for my neurostimulator). It may seem like I'm packing enough stuff for a weekend trip, but I need to have some things on hand... just in case. This is something that many people simply don't understand. I can't just run out the door... I have to be able to gather my things, first.

It sometimes takes me a week from when I need to go to the grocery store, to when I actually go (and that's because my husband goes with me... it'd probably be even longer, if I was on my own). I can drive my car... when I have enough energy and I don't have a migraine. I can go shopping... when I feel up to it. It's so frustrating!

I have become so dependent on my husband. He is supportive on every level... he's such a blessing! He knows how to call my bluff, when I say that I'm alright but I'm really tired/depleted and/or hurting. He helps support me, when I have trouble balancing and walking on my own. It has taken me a long time to get past the "I don't need your help walking," but now I'm mostly just grateful that he's there to be able to assist me. He drives me to doctor appointments, and short shopping trips (mostly for groceries). He takes care of me. ...I'm finally having at least small windows of opportunity that allow me to help a bit more than I used to. :-)

I'm thankful that my mind is still at least fighting to remain independent. I have cognitive difficulties, so it may take me a lot longer to process things... but, I enjoy seeing glimpses of ME, and those glimpses usually come via my thoughts.

UPDATE (November 2013):Reading through what I wrote 2.5 years ago, allows me to see how much I've changed and grown... what things are the same, and what things are different. Many of the limitations I previously wrote about are still limitations that I deal with on a daily basis. However, I think I've reached a level of acceptance. I'm not exactly sure how to explain it, but I wanted to include a short note / update at the end of this post.

Today's topic is: "Three Truths and a Lie: Tell us three things that are true about you, your condition, your Health Activism, or your life. Now tell us a lie. Do you think we will be able to tell the difference?"

I have a fear of needles.
I struggle with anxiety and panic attacks.
I'm getting my second round of Botox treatment for chronic migraines today.
I'm not at all anxious about today's Botox appointment.

Well, I think it's pretty obvious that the last one is the lie. :-/ I'm sorry I wasn't more creative with this post, but my mind is pretty well occupied... trying to relax and remind myself that I've done it before and I can do it again. Prayers welcome.

Thursday, November 14, 2013

Patients For A Moment (PFAM) is a patient-centered blog carnival to build connections within the community of people who blog about illness, disease, and disability. Leslie, at Getting Closer to Myself, is hosting the next edition of the PFAM blog carnival. The topic is: "What do you do when you can't keep up? What do you do when you feel like everything is just too much?"

This topic is something that I think everyone deals with at some point in their life. Everything seems to happen all at one time, and it can feel like you're barely able to keep your head above water.

So, what do you do?

For me, it depends.
It depends what all is happening at the time.
It depends on how long things have been piling up.
It just depends.

Sometimes, I just shut down.
Sometimes, I cry.
Sometimes I write in my journal and/or blog.
Sometimes, I talk it through with a loved one.
Sometimes, I ask for help.
Sometimes, I make a list of how to tackle one thing at a time.
Sometimes, I do a combination of things.

But, I always have hope.
Hope that I'll be okay.
Hope that there's more out there.
Hope that I'll see light again.
Hope that the God of Angel Armies is always by my side.

There are times, though, that I simply don't know how to hold on to hope myself.
Thankfully, I've been blessed with friends and family that are willing to hold onto hope for me, even when I don't know how to myself.
Hope is always there... Thanks be to God!

“‘The Lord is my portion,’ says my soul, ‘therefore I will hope in Him.’ The Lord is good to those who wait for Him, to the soul who seeks Him.” (Lamentations 3:24-25, NKJV)

Wednesday, November 13, 2013

Today's topic is "Evolution. Write about how being a patient or caregiver has changed you. How have your goals changed? Have your values changed?"
There are so many things that come to mind for this topic. I have changed a lot, since I started living with chronic debilitating pain 5-years ago. I've written quite a lot on the topic of change... here's one that jumps out in my mind: Change: Life Since the Accident (Jan 6).

Slowing down
I've learned (and am still learning) to slow down. It hasn't been easy, as I was always on the go, before my accident. I planned nearly every hour of my day... man, was I a planner! But, that doesn't work for me now. I have to be mindful of my body's limitations in a way that I never did before. Otherwise, my body may just shut down and/or I later pay a very high price. So, I find my life is a much slower pace than most others, but that's what I need.

Living in the present
I'm learning more and more to simply live in the present moment. It's harder for me to do at some times than others, but I'm much better at doing it than I used to... I still have a way to go, though. When I'm having good moments, I do my best to cherish and enjoy them, regardless of how long they last. When I'm having very painful moments, I do my best to tend to my body and turn my focus on God - thanking Him for what I have, asking for His peace through the storm, praying for others who are experiencing any pain, etc.

Depending on others
I grew up to be an independent woman, and I've always taken pride in that. So, being thrust into a position of truly needing to depend on others was a huge (undesired) lesson in humility, among other things. I still have difficulty with asking for help, but I'm slowly becoming more comfortable with asking for and accepting assistance from others. I think it's an important lesson for everyone - not to depend on others for everything, but to be able to ask for and accept help when needed.* There's a blog post that I started almost 2.5 years ago regarding independence / dependence... I think I'll work on finishing and posting that in the next few days.

Gratitude
I find myself filled with gratitude in a different way than I was before. My list of things I'm grateful for includes even the simplest of things that I used to just take for granted. And, as humbling as that can sometimes be, it keeps me focused on the things, big and small, that God has blessed me with.

I have changed
I've become more focused on my priorities, stronger in my faith, more outspoken in health matters (especially concerning justice for those with disabilities), more understanding of others, and more forgiving of myself and others.

Goals have changed
My goals have changed. Sometimes I feel like a failure because I don't have my 5- or 10- (and so on) year plan on the tip of my tongue. My goals aren't SMART (specific, measurable, attainable, relevant, time-bound), like I was trained to believe is necessary. Perhaps it is necessary, but I don't feel a specific drive or calling of something to do in my life right now. And, while that sometimes makes me extremely anxious and like something must be wrong with me, I'm doing my best to trust that God has a plan for me.

Overall, even though I don't have SMART goals, I do feel more focused on a clear life purpose: to faithfully follow God, allowing Him to work in and through me wherever I am and however He desires. Now, that's not to say that I don't struggle along the way. I don't have any clue what I'm supposed to be doing with my life, but I'm doing my best to root myself in the One who does know.This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

Today's topic is: "Top Three Tuesdays. Name three songs that you can listen to that get you out of a low point or lift your spirits."

I've really been enjoying the few songs I've heard by Michael Pollack - Chances Are, Get Well, and More Than Ever. I have his songs downloaded from iTunes, and I'm having a hard time finding any good videos on YouTube. But, I'm going to link what I could find.*The best way to hear these three songs are to go to his website, where he has them available to play for free or purchase downloads from iTunes.*Enjoy!

Chances Are
Michael Pollack received a lot of attention after a video of an impromptu performance with Billy Joel. You can take a look / listen to that and Pollack's song, Chances Are, HERE. You can also search YouTube for "Michael Pollack Chances Are," though it's not allowing me to post it here in the blog. Some of the lyrics to this song are:

"You may be alive, but are you living? I promise you the two are not the same. Never hesitate to take what's given, 'cause chance are this chance won't come again."

Get Well

"What you got left? Where can you go? Can you open up the dreams you had long ago? When did you break? When did you fall? Did you forget how to walk? Did you forget how to crawl? Did you run out of breath? Are you tired as hell? I can't help you come back I can't help you get well... You're gonna find your peace."

Sunday, November 10, 2013

While on a class trip to Athens, Greece, I ended up with a monster migraine. One of the professors there responded with such kindness and compassion. He helped me, and then supported my decision to not miss the day at the Acropolis (despite my having sunglasses on, a jacket over my head, and needing assistance walking). He didn't question or belittle me. He simply offered my understanding, compassion, and kindness. And, that's what I hope I can offer to others.

It's so interesting to me, looking back from where I am today. I've dealt with frequent headaches for as long as I can remember. I had infrequent migraines, then, too (though, most of those were walks in the park compared to the migraines I've had since the accident). So much has changed, yet the love and provision of my God has stayed the same. He is always there.

October 10, 2013 marked the fifth anniversary of my car accident, here's what I wrote...

I had some anxiety leading up to today because I've had some difficulty on this day in the past. But, God blessed me with bringing a memory to my mind, reminding me that He always provides for my needs. Thanks to a Facebook post from my Alma Mater asking what our fondest memory of a certain professor is, I was able to re-live a moment that was painful, but comforting... and writing this blog post has allowed me to re-live beyond that moment.

Just a little back-story... I spent a semester studying abroad at my Alma Mater's campus near Rome. During the semester, the entire class and the Rome semester professors spend 10 days travelling together to a few different cities in Greece. Our Western Civilization professor offered amazing lectures at many of the sites along the way. It was truly a once-in-a-lifetime experience, and I'm so grateful that I was able to participate!

The setting is Athens, Greece.

It was Carnival in the Eastern Orthodox Church (different date than the Western Christian calendar - think Mardi Gras), so the city was a big celebration. I decided to join the celebration in the evening with a group of friends - we were going to spend some time enjoying the festivities and try to find somewhere open to get something to eat.

After wandering around the city for a while, a migraine hit... HARD.

All I could think of was how am I going to get out of this crowd of people and back to the hotel?! I mentioned that I needed to leave immediately to my friends, and thankfully one of the guys said that he'd walk me back to the hotel and make sure I was okay. I told him I needed to get something to eat and something with caffeine to drink - we were able to find a Coke quickly, and then we stopped at the McDonald's just around the corner from the hotel for some chicken nuggets.

Unfortunately, I think I'd forgotten my migraine medication back at the Rome campus. See, these were before the days of chronic migraines... before the days of carrying my meds everywhere I go. I had frequent headaches, but was able to function through most of them. But, my more severe migraines weren't all that often. So, getting something to eat, caffeine to drink, and getting back to a dark / quiet hotel room was my plan of attack.

The girls I happened to be roomed with for those few days were understanding and helped however they could. But, the migraine continued.

If my memory serves me well... I spent the next day in the hotel room, doing my best to sleep off the pain. Honestly, I'm not exactly sure what all happened, but I'm pretty sure I missed out on some things. A large group of us went to church service that evening for Ash Wednesday (in the Eastern Orthodox Church). I struggled making it through the service, and talked with a professor's wife afterward to see if she happened to have any medicine that might help. Again, these were before the days that over-the-counter meds were the equivalent to tic-tacs for me. She didn't have anything, but apparently one of the professors (or his fiance) dealt with migraines and had some meds and knowledge of migraine.

I talked with this professor, and he helped get me some meds and made sure I was going to be okay. He told me that I'd be excused from the following day's class trip to the Acropolis. I told him that there was NO way that I was going to miss that trip! How could I miss a once-in-a-lifetime opportunity like that?!?! He assured me that he'd help any way he could, if I decided to go the following day.

He checked on me the next morning at breakfast. I was still in quite a lot of pain, but was beyond determined to go with the group. So, he gave me a few suggestions on how to make it through the day outside in the blinding sun. I had sunglasses, a borrowed hat, a jacket or blanket draped over my head... luckily, we'd walk a bit and then stop and sit for lectures at various locations. He checked on me off and on throughout the day. I listened to him lecture. Someone helped make sure I was alright walking places. And, I peeked my head out to see the sites as much as I possibly could.

The Acropolis is one of the MOST interesting and beautiful sites I've ever seen! I would have deeply regretted missing the opportunity to visit it, so I'm glad that I was able to push through the pain and participate as much as I could. To this day, Greece (especially the Acropolis in Athens) is one of my favorite places in the world!

*I'm going to post a follow-up post to this later today, to share a few more reflections... so, please stay tuned.This post was written as part of the National Health Blog Posting Month (NHBPM). Other bloggers will share their posts on this FB page.

October 10, 2012 marked the fourth anniversary of my car accident. It actually snuck up on me. I freaked out the moment I looked down on the computer and saw the date, everything just hit me all at once... and hard!

It was all I could do to reach out - I texted with a dear, dear friend that really helped me through that time... and many moments since then. I believe that the way she comforted me was amazing, and is worth sharing.

When someone is hurting (mentally, physically, emotionally), I think there are some important ways or things that someone can do to show they care. Not every person will necessarily be able to offer all of these, but hopefully the hurting individual gets them from one or several people.

Validation
She validated the pain and panic that I was experiencing: "What a horrific thing to suddenly remember and have on your mind. Seems normal given situation... Understandably upsetting. It sucks."

Offer help / support
She offered help: "What can I do for you? Trying to avoid saying trite things..."

Safety
She reminded me that I'm safe: "...want you to remember that you are safe."

Present moment
She brought my focus back to the present: "Look around you. See where you are. Hug Honey Bee. Listen to the noises of the house. You are safe."

Reminder
She shared a very important reminder that I've used over and over again: "Darling, remember PAIN TAKES AWAY OUR PERSPECTIVE. And you are really suffering right now and having memories. Try to stay in the moment, just for right now."

Friday, November 8, 2013

I love quotes! I believe that words are filled with power, and inspiring words are simply priceless. Today's post is about sharing three favorite quotes. I'm not sure that these are my favorites, but they speak to where I'm currently at in my journey.

"I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do." ~Edward Hale

"Don't be afraid of your flaws; acknowledge them and let God use you anyway. Quit worrying about what you're not and give God what you are." ~Joyce Meyer

"Never doubt in the dark what God has shown you in the light." ~Victor Raymond Edman

Thursday, November 7, 2013

Today's topic is "Mary Poppins Carpet Bag. Write about what's in your bag / purse every day - and why!"

I have quite a few things in my purse... so much that my husband has actually referred to it as my Mary Poppins bag, or as my "bag of tricks." LOL.

I struggle with severe anxiety, if I'm not prepared. While some things are just nice to know that I have, other items have lead to panic attacks if I don't have them with me for some reason... even for short trips out. So, what are some of the things in my "bag of tricks"?

Wallet - My wallet has all of my health insurance cards, as well as my ID, credit cards, and cash.

Medications - I always carry my prescription migraine, anxiety, and nausea meds. I also carry a small container that has various non-prescription meds (namely, for allergies and gastrointestinal issues).

Sunglasses - I always have my sunglasses because I use them so frequently. Without them, I don't know how I'd be able to even stand to keep my eyes open sometimes.

List of medications - I keep a printed spreadsheet that contains my insurance information, contact information for my doctors, my medical history, family medical history, current medications, list of allergies (including medications), and a list of past medications I've tried (including dates, dosages, and side effects). This has proven helpful in the past, especially for visits to the emergency room... when you feel bad enough to go to the ER, the last thing you want to (or can) do is recall and communicate all of the information they continually request - it makes things easier for me, my husband (or whoever has to take me to the ER), and the staff.

Cell phone - Of course, I always have my cell phone with me. It keeps me connected, and my health calendar is on my phone - easy access, all the time.

Snacks - I always have some sort of snack in my purse. This has come in handy on many occasions. I don't know if I have a problem with my blood sugar level or what, but I can get very irritable and weak if I don't eat every couple of hours. I try not to let myself go too long without eating. I almost always have water with me, too - it helps me from getting dehydrated, and it helps with the dry mouth that I get from some of my medications.

So, back to how things have been the past (just under) 3 months. I feel pretty confident in saying that I didn't get any relief from Botox. Things are a little complicated because I was off one of my preventive supplements for a couple weeks, right when Botox would've been starting to help. I ran out of the supplement (due to a problem with automatic refills) and was off of it for a couple weeks. Just before I ran out, I talked to my doctor, and we decided to just discontinue because it didn't seem to be helping (after a few months). I think the increase in pain was because of stopping the supplement - not necessarily that the supplement was helping, but just the process of getting off of it.

I've been back on the supplement for about six weeks, I believe. My pain levels have been better the last couple weeks. But, is it due to being back on the supplement? Botox wearing off? Or any number of other factors? It's so frustrating to not know, since there are so many factors at play all the time.

Will I have a second round? I'm not sure. Honestly, I have very mixed feelings about it. I don't think it helped at all (and may have actually worsened the pain for a while), but that's not to say that another round wouldn't. I don't have such negativity about it that I feel that it won't help at all, but I'm also not super hopeful that another round will provide relief. My doctor doesn't really think it'll help, but he's willing to try another round.

With that said, I'm in the interim right now. My doctor said that insurance may not cover another round because the first round didn't provide relief. I've had my doctor's office submit a request for another round to be approved by my insurance, so I'm waiting to hear back (I would need to do the second round in the next week or two).

I don't know that I really want to do another round, though.

I was blessed that our insurance covered my first round of Botox 100%. So, I think I may go ahead and do a second round if insurance will cover it. But, I'm not going to pay out-of-pocket for a second round. I've found myself hoping that God will put obstacles in place, if I'm not meant to... not that that indicates that I'll get relief if He doesn't put up obstacles, but yea.

For better or worse, that's my first round of Botox experience. I'll let y'all know, if I end up trying another round in the future.

*Update: I just heard back from my doctor's office. My insurance has approved another round of Botox. Since my insurance hasn't changed since last time, we're assuming it'll be covered 100%. So, I'm going to pray on it, and talk to Jeremy about it today. I have November 18 temporarily scheduled, but I told them I'd let them know whether or not I'm going to go through with a second round. So, please keep me in your prayers - I need guidance and discernment for what I'm supposed to do.

*Note: I meant to post this November 4th, so please consider this that day's post.

Today's topic is "Training Wheels. Write about a time your health condition forced you to grow up and take the training wheels off (so to speak)."

I've lived with chronic pain since (at least) my teens. It wasn't always debilitating (thankfully), like it often is now. Living with chronic illness can definitely force you to grow up more quickly.

Most people in their teens and twenties don't visit their doctor(s) frequently - usually just for physical exams, vaccines, and if they get sick with something along the lines of a cold / flu. Many don't give their health a second thought because it rarely even appears on their radar. They're free to live life without thinking about the health-related consequences of doing even the simplest of tasks. Life is lived without the concern of whether or not their health with hold up that day, week, month, year, etc... good health is considered a given, somehow.

I started seeing specialists in my teens to try to diagnose and treat my symptoms (that, except for an injury which had a clear diagnosis and treatment, were all invisible illnesses without clear diagnoses or treatments). Around the same time, I also started tracking my symptoms in a health calendar, which I've kept ever since (though it has transformed over the years). Not as much when I was in my teens, but I've increasingly had to consider whether participating in something would increase the pain. Since my migraines became chronic, I'm faced with actively weighing out how doing even simple tasks will affect my health. My health is not only on my radar, but it's plays a prominent role in my life and the decisions I make daily.

After living with some sort of chronic pain for so much of my life, it's hard to pinpoint a single situation that my "training wheels" were taken off. Chronic illness forces you to acknowledge your limitations and accept your life as it currently is.

Perhaps one situation that required my "training wheels" to be removed was my decision to move to Tulsa to start graduate school, less than a year after my car accident. I went from living with my parents to living on my own, several hundred miles away. I had to figure things out on my own, in ways that I hadn't before. I'd lived on my own before, but never with the level of chronic illness I've experienced following my accident. It was frustrating because I knew what needed done, but I physically and/or emotionally couldn't do it all myself. Learning to ask for and accept help was (and continually has been) an important lesson living with chronic illness has taught / is teaching me.

Sunday, November 3, 2013

I'm not really feeling today's topic / prompt, as I suspect may be the case as this blogging month progresses. But, that's okay because I'm really just wanting to get back into blogging / writing, so no requirement to follow the prompts. :-)

So, I'd like to take a moment to introduce the newest addition to our family, Miss LayLee!

I've previously written about the first dog we got, Our Honey Bee. Honey and LayLee were actually fostered together off and on for quite a while. In fact, we met (and fell in love with) them both at the same time. Unfortunately, we were living in an apartment at the time, so were restricted from having a pit (LayLee). We adopted Honey in July 2012, and were able to adopt LayLee in August 2013.

We now have two dogs, and it's been quite a change. Despite the challenges, it's been so awesome to see the dogs learn and grow. LayLee and Honey are best friends, and now sisters. Jeremy and I are enjoying the bonds we're building with the pups. And, we're now a happy family of four.

Saturday, November 2, 2013

I think I can I can begin (and maintain) an exercise routing, starting with walking more.
I think I can feel less guilty when I choose to take care of myself, even if that means saying "no" or canceling plans with others.
I think I can read and write more frequently.
I think I can help end the stigma of Migraine disease and Invisible Illness.

I know I can be a loving a supportive wife (and mom to my dogs).
I know I can be there for loved ones (even if not always in the ways I'd prefer to).
I know I can continue making small changes to improve my quality of life, and keep putting one foot in front of the other.
I know I can live a full and meaningful life, despite having chronic pain.

My favorite health app is, by far, is still My Pain Diary. You can check out the app website and Facebook page. I've been using the app for 1.5 years now, and it has been incredibly useful in keeping track of how I'm doing on a day-to-day basis, as well as allowing me to see patterns that I otherwise might never have noticed. It's truly been one of the most useful tools in my toolbox.

Disclaimer: Nothing on this blog is intended as medical or legal advice.

What I write on this site is my own, and if it is someone else's, I take special care to attribute it to the original author. So, please don't use any of my material without proper attribution or permission. Thanks.